For Individuals, Families, and Caregivers Affected by Epilepsy

This page offers a curated list of reliable external websites to support individuals living with epilepsy, their families, caregivers, and healthcare professionals. From research organizations and advocacy groups to practical tools and community programs, these resources can help you better understand, manage, and live with epilepsy.

Disclaimer:

Epilepsy South Central Ontario provides these links for informational purposes only.

We do not formally endorse any third-party organization, product, or service.

We are not responsible for the content, accuracy, or availability of external websites.

These resources do not replace medical advice from your healthcare provider.

Please consult a qualified healthcare professional for personalized care.

Last reviewed: May 2026

Epilepsy Organizations & Advocacy

• Epilepsy Ontario
  Provincial organization providing support, education, and advocacy for people living with epilepsy in Ontario.

• Canadian Epilepsy Alliance
  National alliance advocating for epilepsy awareness and support services across Canada.

• Epilepsy Foundation (USA)
  Great for international resources, up-to-date research, educational videos, and support tools.

• Canadian League Against Epilepsy (CLAE)
  Professional organization advancing epilepsy care and research in Canada.

• International League Against Epilepsy (ILAE)
  Global organization dedicated to advancing and promoting epilepsy knowledge worldwide.

• International Bureau for Epilepsy (IBE)
  An international organization focused on improving the quality of life for people with epilepsy.

• Best Medicines Coalition
  An advocacy group focused on improving access to essential medications, including anti-epileptic drugs.

• World Health Organization – Epilepsy
  Authoritative factsheet on epilepsy, global impact, and public health strategies.

Research & Clinical Resources

• EpLink – Ontario Brain Institute’s Epilepsy Research Program
  Research network focused on improving epilepsy diagnosis and treatment in Ontario.

• AboutKidsHealth – Epilepsy
  Educational resource providing easy-to-understand information on epilepsy for families and kids.

• Southern Ontario Epilepsy Clinic – Dr. Bercovici
  Specialized clinic providing expert epilepsy diagnosis and management in Southern Ontario.

• Dravet Canada
  Support and information for families affected by Dravet syndrome and related epilepsies.

• SUDEP Action (UK)
  Organization dedicated to raising awareness and preventing Sudden Unexpected Death in Epilepsy.

Tools, Communities & Support

• Seizure Tracker
  Free online tool and app to track seizures, medications, and triggers for better management.

• PatientsLikeMe – Epilepsy Community
  An online community for people with epilepsy to share experiences and find support.

• Epilepsy Foundation – Seizure Diaries
  Offers tools and tips for tracking seizures to help manage epilepsy and identify patterns or triggers.

• Passport Program

  A funding program that provides adults with developmental disabilities the flexibility to choose and purchase services and supports that help them live independently and participate in their communities.

  Developmental Services Ontario

  A provincial agency that helps adults with developmental disabilities find and access government-funded developmental services and supports in Ontario.

Funding & Financial Support Programs (Ontario)

Special Services at Home (SSAH)
Provides funding to families to help cover costs related to respite care, support for daily activities, and services that promote personal growth and development for children with physical and/or developmental disabilities.
https://www.ontario.ca/page/special-services-home

Assistance for Children with Severe Disabilities (ACSD)
Offers financial support to low- and moderate-income families to help with the extra costs of caring for a child with a severe disability. Includes a monthly payment and access to additional benefits and services.
https://www.ontario.ca/page/assistance-children-severe-disabilities-program

Seizure Response Dog Programs

• Lions Foundation of Canada – Seizure Response Dogs
  Provides trained service dogs to assist people living with epilepsy.

Related Conditions & Neurological Resources

• Tuberous Sclerosis Canada
  Support and information for those affected by tuberous sclerosis complex, a condition often linked with epilepsy.

• Neurological Health Charities Canada (NHCC)
  Coalition of neurological organizations advocating for brain health across Canada.

• Brain Injury Canada
  Resource and advocacy group supporting people affected by brain injuries, which can be related to epilepsy.

Medication & Safety Resources

• Drug Shortages Canada
  Updates and alerts on medication shortages, including anti-epileptic drugs.

• MedicAlert – No Child Without Program
  Ensures children with epilepsy have MedicAlert identification for emergencies.

Suggest a Resource

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